A forever pain

Most people in our lives don't know how to act, react, or what to say. Most want to make us feel better and know they can't. I'm sure that can feel awkward as we've been on the other end unfortunately. I figured the best thing to say would be "I wish there was something I could say", or "I wish there was something I could do to make it better."

Truth is nothing anyone can do or say can make this better. And while that may be very frustrating, its the honest raw truth. Nothing is going to take the pain we are feeling away. Nothing is going to make it better, not even time. We will learn to cope with our pain and live with it, but the pain will never disappear or go away. And to be honest, we wouldn't want it any other way. Its always going to be a reminder that Lilly did exist, she was here with us.

Lilly did so many amazing things while she was alive. She lived 9 months in utero, 6 days 5 hours and 30 minutes on earth when her life expectancy ranged from stillborn to a couple of hours. She surpassed anyone's expectations even my own. We are grateful and blessed to have the memories we have of Lilly Elizabeth and are honored to be her mom and dad forever.

This is a forever pain, nothing will take it away from us. We will have moments where we are wallowing in our grief. We will have moments where we can laugh and enjoy life. We just remember what we've lost as parents, as a family, as an individual.

Milk Donation

I went and had my blood test done for the milk bank. I am sending the milk I have pumped since having Lilly to a milk bank in Texas. I was referred to the website breastmilkproject.org by the lactation nurse at the hospital. It gave me hope, as I did not know that was even possible. Lilly has definitely taught me a lot. The lady at the milk bank described a baby who had been born with his intestines all on the outside and so the Dr. had to put them back in and now he has what they call short gut something (I apologize as I can't remember the technical word) and he can not tolerate anything but breast milk. He has turned a year old and still he can only tolerate breast milk. So basically the only reason he has been alive so long is due to breast milk and the use of the milk bank. They keep trying to give him something else, though he hasn't been able to tolerate it. Unfortunately there are many stories like this and I hope that Lilly's breast milk can help one of those babies. They use a lot of the milk for the NICU's in the hospital for the sick babies and those born prematurely, and if the Dr's prescribe breast milk to a baby. I found that you can also be nursing a baby and donate extra milk you may be pumping. My goal is to try and see if we can get a milk bank in the state I live in, as there is not one yet.

Lilly has taught me so much in that I used to stress so much about everything and now I just take it one moment, one day at a time and things that used to matter just aren't important anymore. There are more important things out there and I knew that but now I feel it and can stress less about the small stuff. Its a hard lesson to learn though. And I'm still learning as I go.

I've decided to type up Lilly's story soon so when that is finished I will post that it is done, that way those of you who are willing may read her story. I feel kind of bad that I haven't done it sooner, though I feel everything happens when it is meant to. Its been a rough week, I've found that when I least expect it the tears start to fall. And then other times I am ok and can talk about Lilly without feeling broken hearted that she is not in my arms. I'm thankful that I am ok around others that are expecting as they should enjoy and be excited about their pregnancy. And I can be happy for them. It doesn't mean I miss Lilly any less.

Courage is being afraid, but going on anyhow-Dan Rather

Today the kids asked to go visit Lilly so that's what were doing later this afternoon. We visit her graveside often. My husband goes almost every day either before or after work. Were sad that another baby has already been buried next to Lilly. The one before Lilly was buried almost a year ago, that is sad too. Its always heartbreaking when another baby is lost to the world.

This week so far has been a rough one for me, it seems that the pain just gets stronger and stronger, more unbearable and overwhelming. I call these my bad days. I do have LOTS of good days but I have LOTS of bad days as well. I can laugh, but I still cry. This pain is a FOREVER pain and we will learn to live with it; to cope with as we've been told.

Yesterday while folding clothes, I found one of Lilly's many burp cloths she used, and the tears came again. It was in the clean clothes but it still has her smell. I placed it in the bottom of her bassinet for safe keeping. The contents of her bassinet have been left the way that they were the last time she laid in it.

I feel Lilly is always with us. I felt cold on the day she would have turned one month old (3/22/2010). I felt she was with me then. The day after she passed, my husband, who never gets cold was freezing all day. My mom told him that it was Lilly hugging him. I feel Lilly watches over us and I know she is happy and I imagine she is doing God's work. I am trying to live my life the way I feel God wants me to. I feel He is guiding me and I plan to follow. Just as I felt during our journey with our youngest daughter, Lilly. I'm not always sure what He wants from me or why though I feel He is ever present and working through me as He did with and through Lilly.

There was a time today where I felt very angry with one individual who I feel has abandoned us and just was here to be a part of our lives for a moment just to say she was a part of it. It angered me that our daughter meant so little to her. Though she seemed to have meant a great deal to her while she was alive here on earth. She has not been here for us now and was not during my pregnancy. I understand its sad and hard to be around us, unfortunately we have been on the other end of parents losing their child. But I ask that you imagine what its like to BE US and heartbroken.

Now, I feel that the anger and resentment towards her is a wasted emotion, and a waste of time, and I plan to with the help of My Lord not think twice about her again. The people who truly care are with us still, that's what matters. We have lost a few along the way, gained a few, and the constants who have remained; our bonds have grown stronger. That being said, I want to thank those who have supported and stood by us we've been so fortunate to have lots of support and we are ever grateful for that.

The bigger picture is we miss our dear daughter. She has given all of us more than we could have ever hoped for.

October 27, 2009-d day

In October, one afternoon I had received a voice mail message from my Doctor's office. One of the midwives had left a message to call her back. Being our fourth pregnancy we knew that was not a good sign. They had never had to call us.

I returned her call and was told that the levels from the AFP (alpha fetal protein) test came back positive and that I would have to schedule an ultrasound at a specialists office. A week later our appointment for the ultrasound was made for October 27, 2009. My husband and I were ready for anything we already loved our baby, NOTHING would change that. We were ready for anything, anything except what was discovered that fateful day.

October 27, 2009 was the day we also found out that my husband's cousin (26 years old and father of 3 himself) had fallen mysteriously ill and was in a coma and they did not expect him to make it. My husband found that out the morning of and relayed the information to me on our way to our appointment for Lilly.

We went in with the ultrasound technician and she looked closely and long at every part of our baby. We had decided if something was wrong, we were going to find out the baby's gender. She told us that we were having a girl! She looked at her heart, bladder, etc and stated that they all were perfect. She said there was indeed an issue to be discussed with us by the doctor in the office. She never let on how serious the "issue" was.

We didn't wait long until the doctor called us back into his office. He sat us down and explained to us that our daughter had anencephaly. He explained that anencephaly is so severe that it is incompatible with life, zero survival rate, and that either our baby would pass in utero, be stillborn, or not live for very long afterwards. We were in shock! There were two choices as we asked what options there were. He said either carry the baby to term or terminate the pregnancy. Terminating was not an option. There was no saying how long we would have her for. He explained that there was no rush in our decision, he was very compassionate.

We were already in tears the minute he gave us this devastating news. We cried so much and so hard that day and days after. We called family, friends, and coworkers to inform them of our sad news. We went home and researched anencephaly and were even more devastated as most of you know the pictures and descriptions are so discouraging.

The next day I woke up and just started crying. We had an appointment at my gynecologist's later that afternoon. They called my name and I just started to cry and couldn't stop, the ladies in the office cried with us. My Doctor was VERY compassionate and supported whatever decision we had made. We told him we were not terminating her. The couple weeks afterwards were awful, and hard. We decided we would enjoy her for as long as we had her, however long that would be. We would mourn her IF or When the time came, but not while she was still living. And as long as she was with us she would live life to the fullest and we would show her happiness and love. I would eat all the goodies and food for her. We would talk to her, hold her, touch her, read to her, dance with her, play with her. And we did!

One Month today-memories of Lilly's trips

She would have been one month today. Wow, unfortunately time flies. Today was a sad day in that she is not here so I wanted to post something upbeat because at the same time as being sad about missing her, I also am happy to have spent time with her and gotten to know her like we did.

Lilly was with us (though we didn't know it at the time) during our trip to visit our family in Texas. She celebrated our 10 year high school reunion with some family at a barbecue (you know who you are). I got to celebrate a birthday with Lilly. I also got to eat ice cream cake, churros, and lots of good food with her. She got to go to Sea World with us, which is my favorite amusement park!!!

Lilly went with us to Southeastern, a bowling tournament that is held yearly. Our family bowls and my husband was in the tournament. Lilly and I went swimming, or tried to rather, I got nauseous and had to get out of the pool but we sunbathed all day. That was a good day, just hanging out by the pool. That trip was when we told our family that we were expecting our fourth child and they were excited and happy, as it should be. It was a perfect moment when we told all of them!

Lilly was along for the ride when we visited South Carolina, where more of our family is located. First for an IRONMAN tournament that my father in law holds every year. Its a whole weekend full of bowling. We were there for that and later for their yearly New Year's scotch doubles bowling party. I had asked the Dr. if it was ok for me to bowl since I hadn't been bowling in years and I was over 31 weeks pregnant. I didn't bowl good, but I had fun and Lilly got to go bowling with mommy.

Bad Day

We took the kids bowling this morning. All the kids. Usually my husband takes the older two and I stay back with our 2 year old. Today we decided all of us should go. It was the first time I was around people who have not seen me since the last time I was up there; when I was still pregnant with Lilly. I woke up very sad this morning. Waking up is the hardest part of my day. Its like getting stabbed with a knife every morning as I am remembering that this all has happened. Its not a dream, and Lilly has passed. Mornings are usually hard on me but usually I can start breathing again. Today was not one of those days...which I have had days like this before since Lilly passed. It feels like its getting harder though. These are the days I actually have to make an effort where living is not easy and going on and doing daily tasks are not easy. I'm still having trouble eating regularly and sleeping regularly. What is that anyway, regularly? I'm lucky if I eat more than one meal a day. I eat enough but I should be eating three meals a day, especially cause I make sure my 3 living children are eating healthy. I do eat when I need to, I just don't feel hungry.

Anyway, bowling was fun and we had a birthday party to go to later this afternoon. And this was the first day I was asked "Where's the baby?" I did not think it as an inconsiderate question, today. She asked if I worked and I told her I did but I am on maternity leave. I opened the door really, not on purpose, but that's what I did by saying that. I wasn't offended, I really do enjoy telling people about Lilly. I love talking about her. Any chance I get I enjoy talking about her. I don't think some of my friends understand that or are uncomfortable. I think its too sad for them. Death is sad. Losing an infant, a baby is sad. Trust me I know first hand. People don't know what to say or are uncomfortable around me. It makes me feel like I'm the plague or the "elephant in the room" I'm still me, and I'm still a normal person just that I suffered a great loss. My family has, my friends have as well. Were lucky in that most of our family (that includes friends and coworkers) have been extremely supportive and are willing to listen to us talk about our daughter. Trust me that helps tremendously. I just want to thank everyone who has allowed us to tell Lilly's story and who have supported us through this. It is EXTREMELY hard today so I have to stop before I end up crying again. I'm suffering but its ok...I welcome the sadness cause its real and a reminder that Lilly is real and always will be.

The Beginning

We first found out officially (at a Dr.'s office) that we were pregnant July of 2009. We had just returned from a family trip to which I had fallen ill during the middle of. We had always said we wanted 4 or 5 children. We got our wish when we got pregnant with Lilly. I was so nauseous, it felt like the worst I had ever been. It seems like with each pregnancy that symptom just gets worse. There are a lot of concerns that went along with our excitement and joy in being pregnant with our fourth child. Silly, pointless, unimportant concerns. Real concerns; hoping he/she would be healthy, making it past the first trimester. It was amazing and I will never forget how I could not wait to be a mother of four. And now I am! We considered ourselves lucky. We have always wanted a big family.

First day on my own

This is the first official day on my own since having given birth to Lilly. I'm taking it easy. I keep having to remember I did have major surgery less than 4 weeks ago. I figured that there was a reason I wasn't on my own until today. It kept working out for me to be around people. I guess that was all God's plans. I promise to update everyone on Lilly's story its just going to be a process. I have to take all the flowers I've saved and put them in a vase. They have been hanging upside down for a week to dry. And then my hubby and I need to go shopping for a shadow box. A friend of mine or even my hubby are going to help me put the shadow box together. I also plan on putting a scrap book together with the help of my friend who is amazing at scrap booking. Can't wait to go shopping for that. I feel like today is a day of reflection. I do plan on visiting Lilly today. This would be the first time on my own as well. We brought her flowers yesterday all five of us. And the kids left letters and pictures for Lilly. It's heartbreaking without her!! Its nice the kids are so into doing stuff for Lilly and are so excited to leave presents for Lilly..it helps but its bittersweet at the same time. This is a pain we will all feel forever. But I welcome the pain cause it means Lilly was here and also that we love her, treasure her, miss her, and will ALWAYS remember her.

Just wanted to add more to this post. I ended up meeting a friend for lunch and then headed to visit Lilly. I put a blanket on the ground and sat and prayed and that was the first time I was there by myself as well as the first time I really cried at the graveside since the funeral. I've visited since then just with my hubby or the kids so I haven't really had a chance to sit there and cry. It feels good to cry at the same time as it is sad. I'm allowing myself to go with how I feel. If I'm sad I'm sad if I'm happy I'm happy and so on. I then hung out for a little bit longer, before standing up. Its always hard to leave her. I know I can talk to her anytime I want and she's always with us and watching over us...but it still is hard to leave.

My hubby came up with an AWESOME idea. Turns out I bought a journal today for poems, songs, Lilly's story to be written in. And his suggestion was that instead of leaving papers at the graveside that we should have the kids draw their pictures, write their poems/stories/letters, to Lilly in a journal. We can have them read them or show their pictures and describe what's in the picture to her. They will love it I'm sure.

While I was at the bookstore I did look at grieving books for children. I plan on taking hubby with me and shopping for one that we both agree on. There's one called Tear Soup...its long and for all ages. I sat there drinking my coffee and reading most of it. Kind of was on the fence about whether to buy it or not. There were a couple other ones as well.

First post

Starting a blog is new to me. I guess I'll start with our story. This blog is about our youngest daughter Lilly Elizabeth who was diagnosed with anencephaly at 21 1/2 weeks in utero. I'm still dealing with the loss of Lilly so its going to take me awhile to get this blog up and running.

Lilly was born to us on February 22, 2010 at 3:32pm via c-section. Weighing in at 5lbs 3oz and measuring 17inches. Doctors said Lilly would live 2 hours to one day. Lilly went above and beyond that. Lilly gave us SIX days, FIVE hours, and 30 minutes. Lilly Elizabeth passed away February 28, 2010 at 9:02pm in her daddy's arms. Lilly amazed the doctors as well as everyone who met her including her parents. She met so many people in her time here on earth. Lilly was held by many and loved by many. She loved in return as well. She could do lots of unexpected things doctors tell parents babies with anencephaly won't do; what most newborns do. I hope to get her story across in more detail as time progresses. This blog is a work in progress so please be patient.